Patient : I am a 42 year old adoptee. I have had slightly elevated CK off and on for the past 5 years. My symptoms include muscle weakness,specifically thighs stings in my thighs and itching and various muscle twitching.
Whenever I start to get more active, say walking for weeks than adding biking all of a sudden I will start to get cramping in my legs and thighs. Stings and itching through out my legs,feet. I have been to several neurologists and last summer had and nerve conduction test testing,both sides and limbs, and back and neck all unremarkable. I also have had a MRI of head and neck just showing narrowing of canal.
When these muscle issues flare and other sensory symptoms flare my CK elevates slightly to just under 200. I am having more and more difficulty descending stairs and now ascending stairs. My thighs will feel like they are burning and searing and they begin to cramp and then they feel like they are giving out and I literally cant walk well unless I have a stick or ski pole to take the weight off of my legs.
I am very frustrated as I cant do the things I would like to such as biking and hiking.I recently found my biological mother and she said she and my siblings and her father all have something similar but it affects their joints more than anything, I was told it was inherited but they had no name for it.
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